Ascertainment of cancer in longitudinal research: The concordance between the Rotterdam Study and the Netherlands Cancer Registry

Kimberly D. van der Willik, Rikje Ruiter, Frank J.A. van Rooij, Jolande Verkroost-van Heemst, Sander J. Hogewoning, Karin C.A.A. Timmermans, Otto Visser, Sanne B. Schagen, M. Arfan Ikram, Bruno H.Ch Stricker*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Complete and accurate registration of cancer is needed to provide reliable data on cancer incidence and to investigate aetiology. Such data can be derived from national cancer registries, but also from large population-based cohort studies. Yet, the concordance and discordance between these two data sources remain unknown. We evaluated completeness and accuracy of cancer registration by studying the concordance between the population-based Rotterdam Study (RS) and the Netherlands Cancer Registry (NCR) between 1989 and 2012 using the independent case ascertainment method. We compared all incident cancers in participants of the RS (aged ≥45 years) to registered cancers in the NCR in the same persons based on the date of diagnosis and the International Classification of Diseases (ICD) code. In total, 2,977 unique incident cancers among 2,685 persons were registered. Two hundred eighty-eight cancers (9.7%) were coded by the RS that were not present in the NCR. These were mostly nonpathology-confirmed lung and haematological cancers. Furthermore, 116 cancers were coded by the NCR, but not by the RS (3.9%), of which 20.7% were breast cancers. Regarding pathology-confirmed cancer diagnoses, completeness was >95% in both registries. Eighty per cent of the cancers registered in both registries were coded with the same date of diagnosis and ICD code. Of the remaining cancers, 344 (14.5%) were misclassified with regard to date of diagnosis and 72 (3.0%) with regard to ICD code. Our findings indicate that multiple sources on cancer are complementary and should be combined to ensure reliable data on cancer incidence.

Original languageEnglish
Pages (from-to)633-640
Number of pages8
JournalInternational Journal of Cancer
Volume147
Issue number3
DOIs
Publication statusPublished - 1 Aug 2020

Bibliographical note

Funding Information:
We gratefully thank all Rotterdam Study participants and staff for their time and commitment to the study. This work was supported by the Dutch Cancer Society (grant number NKI‐20157737). The Rotterdam Study is funded by Erasmus Medical Center and Erasmus University Rotterdam; the Netherlands Organization for the Health Research and Development (ZonMw); the Research Institute for Diseases in the Elderly (RIDE); the Ministry of Education, Culture and Science; the Ministry for Health, Welfare and Sports; the European Commission (DG XII); and the Municipality of Rotterdam. The funding source had no role in study design, collection, analysis, interpretation of data, writing of the report or decision to submit the article for publication.

Funding Information:
Data can be obtained upon request. Requests should be directed toward the management team of the Rotterdam Study ( secretariat.epi@erasmusmc.nl ), which has a protocol for approving data requests. Because of restrictions based on privacy regulations and informed consent of the participants, data cannot be made freely available in a public repository. The Rotterdam Study has been approved by the Medical Ethics Committee of the Erasmus MC (registration number MEC 02.1015) and by the Dutch Ministry of Health, Welfare and Sport (Population Screening Act WBO, license number 1071272‐159521‐PG). The Rotterdam Study has been entered into the Netherlands National Trial Register (NTR; www.trialregister.nl ) and into the WHO International Clinical Trials Registry Platform (ICTRP; www.who.int/ictrp/network/primary/en/ ) under shared catalogue number NTR6831.

Funding Information:
We gratefully thank all Rotterdam Study participants and staff for their time and commitment to the study. This work was supported by the Dutch Cancer Society (grant number NKI-20157737). The Rotterdam Study is funded by Erasmus Medical Center and Erasmus University Rotterdam; the Netherlands Organization for the Health Research and Development (ZonMw); the Research Institute for Diseases in the Elderly (RIDE); the Ministry of Education, Culture and Science; the Ministry for Health, Welfare and Sports; the European Commission (DG XII); and the Municipality of Rotterdam. The funding source had no role in study design, collection, analysis, interpretation of data, writing of the report or decision to submit the article for publication.

Publisher Copyright:
© 2019 The Authors. International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC

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